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A Letter to New and Expectant Parents of a Baby with Down syndrome

Congratulations on your new baby! Whether you’re an expectant parent or you’re holding your newborn in your arms, your child is precious and is a gift to be celebrated. Six years ago, my husband and I received the news that our daughter, Sofia, had Down syndrome. We’ve learned a lot over the years and are continuing to learn as we go. I hesitated to write a letter to new parents, because this is such a personal journey. But after reading numerous accounts from other parents, I realized we seem to share many things in common. It’s my hope to encourage you as you begin this journey. The future for your child and your family is a bright one, full of hope and joy.

I don’t think it’s ever easy to receive a diagnosis about a loved one. And that may be exactly where you are, if you’ve just received the news your baby has Down syndrome. When my husband and I first received news that our daughter had Down syndrome, we were in a kind of shock. Her diagnosis was presented to us framed in the most negative light possible. Statistics, numbers, and other possible future diagnoses were thrown around, as if there were nothing positive, nothing hopeful about the baby I was carrying and her future.

Nothing could be farther from the truth. Your baby is a baby like no other, in the sense, that he or she has a unique personality, quirks, talents, strengths and weaknesses; all that make any child unique. All children are special. Your son or daughter may have an extra chromosome, but they are just as special as any child. And the love you feel for them will undoubtedly grow into something fierce, as you get to know them.

Being Overwhelmed and Heartbreak

You probably feel overwhelmed and may be fearful over what the future holds for your child and your family. It’s normal to be considering what might be. Know that your child’s future isn’t defined by their diagnosis or by any statistics thrown your way. Just as their lives are not defined by an extra chromosome, neither is yours or your family’s. Before my daughter was born, I remember wondering if ‘life as we knew it’ would be over. It wasn’t. If anything, our lives have been enriched in ways only possible because of Sofia. She is a joy in our lives.

You may be facing great discouragement and heartbreak. Grief is a normal part of receiving a diagnosis affecting someone you love dearly and for whom you’ve waited and planned. It is not disloyal to your child or unloving, as a parent, to work through this grief. As parents, if our already born child is given a diagnosis, we may grieve the diagnosis, but our love for our child doesn’t change. Give yourself a break. Allow yourself time to grieve. Allow your heart to heal.

After my daughter was born, I was surprised to learn how many parents go through a time of grief, as I did. Many talk about grieving over the loss of the child they thought they’d have. I could relate. At a certain point after receiving my daughter’s diagnosis, I realized I was also grieving over my lost dreams for her. I soon realized there would be new, hopeful and joy-filled dreams for her; dreams she’d have for herself, which were no less meaningful and maybe even more meaningful.

I was very aware that family and friends were grieving, too. I found I needed to give them the space to do just that. Everyone grieves differently. Allow them to, but do what you need to do, as your child’s parent and primary caregiver, to stay focused on the positive.

Live in the Moment

As I’ve walked this journey over the last six years, I’ve learned a few things and continue to, as time goes on. One important lesson I’ve learned is to stay in the moment. Don’t miss the joy and wonder of each day with your new baby by getting caught up in the future. Many of the things we were told might happen with our daughter never happened. It’s not worth wasting precious time you have with your baby on things that may never see the light of day. Enjoy your baby! Your son or daughter is a little miracle. They grow quickly and the baby days will soon be cherished memories. I was so excited when my daughter was born to finally get the chance to get to know her. I remember holding her for the first time. She opened her eyes and smiled at me. It was a moment I’ll never forget.

Therapy & Development

Caring for a child with Down syndrome does have challenges, but there are challenges in raising any child. There have been therapy sessions to attend and extra doctor’s appointments, particularly early on. Sofia has had occupational, physical and speech therapy through our public school system and privately, as well. The team of people who’ve worked with her over the years are some of the kindest, most compassionate, generous people I’ve met. Their involvement with Sofia has not only helped her with her development, but has enriched both her life and ours.

One of the first people I met through the Early Intervention program at our school system gave me an essential piece of advice. “You are Sofia’s mom and dad, not her therapists. Your job is to love her.” She was right. You are your child’s parent, not their therapist. Being involved and helping in your child’s development is necessary and even fun, not to mention, rewarding. But it’s easy to get caught up in development. Early on, I learned that Sofia learns at her own pace. Yes, her development has been delayed, but it’s been steady. Working hard to help her, I’d find myself getting discouraged when she hadn’t reached a particular milestone. It never failed that soon after, she’d reach it; on her time.

No two children, typically developing or those with an extra chromosome, develop at the same pace. Each child is different. When those milestones are reached, we celebrate. When Sofia took her first steps at physical therapy, her older brother and I were so excited for her, we leapt off the mat, clapping and woo-hooing. Our excitement took her by surprise and she nearly lost her balance. We’ve learned to try to contain our excitement, but it’s there. She’s now grown accustomed to our cheering, so much so, that she sometimes seeks it out with a grin.

Ask for Help

If you feel yourself becoming overwhelmed, don’t be shy about asking for help. You are not alone. There are people who genuinely want to help you and your child. People you already know and people you’ve yet to meet. Be specific about your needs. Be open to receiving help when it’s offered. It’s not a reflection of you or your parenting to take someone up on their offer to help. People in Sofia’s life, who have real relationship with her and enjoy her friendship, enjoy spending time with her. I’ve been moved by the number of people who genuinely love and care for my daughter. Their lives, like mine and Sofia’s, have been enriched by these relationships.

Seek out people who’ve walked the same road and can offer you assistance, advice or even just a listening ear. Where we live, there is a group for parents of kids with Down syndrome. Just meeting other parents who share our experience has been encouraging and helpful. Make sure to check out any local resource groups in your area. Most major areas have local associations where you can meet other parents of kids with Down syndrome. Also, many local churches have special needs ministries that can be a wonderful resource for parents and families. Take advantage of what is available.

There are also many helpful resources online for information and support. The National Down Syndrome Society (NDSS) is a national advocate for the value, acceptance and inclusion of people with Down syndrome. They have many great resources available to parents on their web-site at http://ndss.org. Among the resources is the NDSS’ campaign called My Great Story, a collection of inspiring stories of individuals living with Down syndrome and their families.

The National Association for Down Syndrome (NADS) is another great resource for parents. NADS is one of the oldest organizations in the country providing support to individuals with Down syndrome and their families. Although, NADS is based in the Chicago area they offer a wealth of helpful information on their web-site.

My Daughter: Sofia

These last six years have been nothing like what I expected. A journey in the truest sense of the word, full of ups and downs, but one that has been and continues to be filled with more joy than I could ever have anticipated. I’ve grown both as a person and as a parent, because of my daughter. She is a blessing in our lives and I wouldn’t change a thing.

One of the most popular posts on this blog is Meet Sofia. If you’d like to read a bit about my daughter, you can here.

Be encouraged. Your child is a blessing and as you get to know them, I’ve no doubt that you too will be blessed. Congratulations! Celebrate your little one!

20 Comments Post a comment
  1. Such a great letter – and it fits for kids with different challenges, too, not just Down syndrome! The grieving, the celebrating, the specialness in every way, and especially the struggle between playing therapist and playing parent.

    October 11, 2011
    • Thanks, Richard. Appreciate your kind words. Glad to hear that it speaks to parents of kids with other challenges, too. The parenting journey is similar, isn’t it? Thanks again.

      October 12, 2011
  2. pam #

    What a lovely honest heartfelt letter,would it be ok to down load and pass on.I am hounered to have had 4 sets of parents who were strong enough to admit this journey was not for them enabling my husband and i to have the great honour of experiencing it with 4 of our 6 children having ds.I thank them with all my heart.x

    October 12, 2011
    • Thank you, Pam. Absolutely, feel free to pass the letter on. What a wonderful story. Your children are blessed to have you.

      October 12, 2011
  3. Samantha walker #

    what a lovely letter, and so true, i am also blessed with my little girl Molly who is 7 yrs now, wish time would not go in so fast, Molly is growing up too quick xxxx

    October 12, 2011
    • Hi Samantha! My daughter has a friend named Molly who is 7. They shared a therapy hour for PT and OT, when Sofia was little. I know what you mean, time just seems to fly by. Thank you so much for your kind words.

      October 13, 2011
  4. CK #

    Fabulous Letter. We too have a little girl who is five and also a real inspiration. My husband has always said she develops at her pace not ours. Like you we celebrate all of the milestones with cheers and applause so loud at times that we have shocked her. Now she is a real chatterbox, her speech is very clear, she gets up to mischief with a huge grin on face. Is in mainstream school and a has a wide circle of friends – The beginning was hard and there are days that are still difficult but on the whole we feel like we won the lottery the day she was born xxx

    October 13, 2011
    • Hi CK. Thank you for sharing about your daughter. It’s funny to hear we’re not the only ones, who’ve shocked our daughter with our excitement:) Thanks again!

      October 13, 2011
  5. Modupe #

    Hi.

    Your letter was quite…moving. I do not have a child with ds but I have over time come to appreciate their/your journey a little more through posts on fb (like this one) from a friend of mine whose daughter, beautiful, like Sofia, has ds. I imagine it is an extremely emotional journey, filled with its highs & lows, its disappointments & despair and its joys & hopes. I have read up on it and it seems impossibly hard, but I guess it cannot be. I just wanted to cheer you on through what must be a continuous discovery process, and wish you and Sofia every success and God’s very best.

    October 15, 2011
    • Your friend is blessed to have you in her life. Thank you, your kind words touched my heart.

      October 16, 2011
  6. Adele Joicey #

    What an emotive and heartfelt letter. It struck so many chords and you capture exactly how I feel as a parent of a child with down syndrome. I smiled as I read the section about life ending as you know it. I felt my life ended when I got Esme’s diagnosis, but you’re right, it doesn’t. Far from it. I have a happy, beautiful girl who makes me smile and laugh every day and who makes me proud. Best wishes, Adele x

    October 16, 2011
    • So happy for you, Adele. Congratulations on your beautiful little girl. She’s lucky to have a mama like you in her life. Glad you enjoyed the post. Have a blessed day.

      November 30, 2011
  7. Parents should not lose hope when something like this happens to their child. I appreciate and feel every word of this post, a mother’s undying love to her daughter. For sure, your journey along with your child Sophia has it’s ups and down but in the end everything will be okay for sure.

    October 17, 2011
    • Life is like that isn’t it, full of ups and downs. Thanks so much for your kind words.

      November 30, 2011
  8. I really like this blog and certainly did bookmark it. Looking forward to more wonderful articles. Your are ranking very high in Yahoo Now i know where to find valuable information and will return to read more.

    October 19, 2011
  9. Tracey #

    Wow! Your daughter is BEAUTIFUL!!! I have been showing her pic to the nurses here. She is a lovely little girl. I bet she looks a lot like her mama. 😉

    Your letter, and the responses to it, make me feel honored to have a Downs baby. Like now I get to join this special, elite group of amazing people. I am overwhelmed with how families that have Downs children support, encourage & love each other.

    January 10, 2013
    • Hi Tracey! I’m so glad that you enjoyed the letter. It really is encouraging to me to hear from other parents of kids with special needs, too. Blessings to you!

      January 25, 2013
  10. Julie #

    Such a peace-giving and encouraging letter! God gives the BEST gifts! Along with Tracey, I feel like God has granted us entrance into a privileged world. It is humbling to receive such support for this adventure. “Your baby is a baby like no other” is one of the most encouraging thoughts, knowing each of our little ones is a treasure chest of uniqueness and beauty, yet to be entirely discovered!

    January 25, 2013
  11. Awwwww….what a cutie!!

    September 24, 2013

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